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Patient Stories

Ramona’s Story in Honor of Rare Disease Day

I am a patient diagnosed with autoimmune neutropenia and AA amyloidosis (renal) which affects my kidneys. My symptoms include fatigue, shortness of breath, low white blood cells, anemia and stresRead More

Tara Z’s Story in Honor of Rare Disease Day

I was diagnosed with stiff person syndrome (SPS) on a Monday night in October of 2017. The impact of my condition on my life has been tremendous. My symptoms… Read More

Hudson’s Story in Honor of Rare Disease Day

I faced lot of challenges both socially and academically throughout my life. However, with a lot of love from my mother and godly mentors, I was able to overcome many of those struggles…. Read More

Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day

Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. Today, Tristan shares his… Read More

Amy’s Story in Honor of Rare Disease Day

I am a patient who has lived with systemic scleroderma for over nineteen years, having been diagnosed as a teenager. 

Rare Disease Day is a day… Read More